Any advice please.
I was diagnosed with Parkinsons in 2010 aged 44........(having lived with the symptoms 4/5 yrs prior to this)
In 2012 after trying to carry on working i was medically from work.
Has i gradually got worse, Being from a proud working family i was unaware what could claim benefits wise and how the system worked.
Eventually i took the step and claimed fro DLA and ESA.
DLA. I was awarded higher rate living allowance and lower Mobility this was awarded indefinitely.
ESA. After the first 12 months, I was awarded (after an appeal) was awarded this indefinitely.
Because i was awarded both indefinitely i still await to be asked to re-apply to PIP.
But this last six months my Mobility has rapidly declined and having just being diagnosed with Dystonia by my specialist.
This being a change of circumstance, even though i would shortly have to apply for PIP. I think i should phone up now and mention this change of circumstance,
Has anybody been in similar circumstance or any advice they can give. Dystonia is an illness in its own right but together with Parkinsons you can imagine the Fun i have been having.
So apart from the Stelevo/Rasagaline daytime and Mirtazapine/Simenet/Clonazapan nighttime. My specialist has started me on Madopar and i am back to see him in a couple of weeks.
Would be grateful to here from anybody.
I'm sorry to hear things have been getting worse for you over the past few months. Please do remember that we can offer free advice - feel free to give us a call on 0808 800 0303 to speak to our benefits and employment adviser (open weekdays 9am - 7pm, Saturdays 10am - 2pm).
We also have some information sheets here which might be helpful: https://www.parkinsons.org.uk/publication-topic/money-work-and-practical-matters
Joanne (Digital team)
Nothing is 'indefinitely'
i went through the process of esa in 2014 i was placed in the esa support group no length of award.
i have applied for pip all the paper work has been sent in with evidence my support worker was told it would be a paper based assessment rather than a face 2 face one, still waiting for the out come.
this morning a esa50 form drops through the post.
So even though i have a degenerative illness of which i have grown worse and that has been established and i have applied for pip with evidence saying so i have to go through that stupid process again.
Perhaps Parkinsons uk isn't emphasising the word degenerative too the government of which sufferers can never get better thus saving sufferers going through a repeat process of establishing the fact that we can never get better? in all the discussions they have with the goverment perhaps mr stephen crabb has discovered a cure for parkinsons?.
Thanks for your replies
Its a mine field out there, The odd time i have watched these Benefit programmes how do these people claim so much money and the ease they seem to have it thrown at them.
This makes me laugh with changing over to PIP,
Parkinsons sufferers , dont get better we just gradually get worse.
I think i will start getting my Paperwork together, Like i said before i have another appointment with my consultant and i will mention this to him and ask for a supporting letter then i will take the plunge.
I will also give that helpline a call Joanne.
Thanks again for your replies
And hey presto a letter for a home visit assessment for pip arrives through the post issued the very same day as a letter for reassessment for esa what an amazing coincidence
I had my home visit last week.......to me visit went well.....but I have read about people thinking the same......only to end up with nothing........ my wife was with me.......the qestions she asked were the ones on the pip form .......and about my mobility in depth ....at the end she said normally at this stage I would ask you to lift your legs/arms up down but I can see your in pain (my fingers were cramped up and my legs also were cramped and my toes were curled and my big toe was pointing upwards)........it sounds funny but I was in agony...........I should have asked but I was that same question on my ESA assessment 4yrs ago........but the young lady could seei was having problems ........but she ask me mostly the same questions on my form ( which I had photocopy in front of me) . Every answer I gave she agreed with me . She didnt look around the house it took 50 mins .......having the home assessment actualy gave me a better apotunity to explain my difficult...........but I'll have to wait and see I dd explain to her that I was aleady on Dla (max care - low mob) and these were awarded indefinitely and all the advice I had been given was to wait until Pip contated me which had probaly have been another year.......buti said my mobility and declined that much and my care was also worse why should I not................only time will tell ........any advice on how long it takes for answer.....after the lady had gone my wife said you can now get rid of all that paperwork.........I said I'm just fiing it until I need it for my appeal lol...........wish me luck tks......
Hi I have been on DLA for years and years for my rheumatoid arthritis.I also now have parkinsons for last 2 years.was sent for a medical for PiP 6 weeks ago and still waiting to hear results.!!!
This for reply.......it was just the way the home visit went went........because the state I was in ........my wife helped me with answers as I was forgetting what we was talking about.........
She said.......she didn't see a problem........I was wondering if any body has heard after a couple of weeks.....
I will just wait for letter........to drop on the door mat.....
My wife says not to worry and we'll deal with it with whet it comes...??
Easier said than done......x